Tag: Carers

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A new article arising from our project in The Gerontologist

An earlier issue of The Gerontologist, the journal for the Gerontological Society of America.

Sometimers, Alzheimer’s? I love that! That’s definitely me

Carney, G., Lugea, J. Fernandez-Quintanilla, C. and Devine. P. (2023) ‘Sometimers, Alzheimer’s? I love that! That’s definitely me’: Readers’ responses to fictional dementia narratives. The Gerontologist.

Our research project has resulted in a new article published in a special issue of The Gerontologist, dedicated to investigating how arts and humanities can find new pathways to understanding ageing. In the article we share our main findings of interest to gerontologists – those who study ageing and older people. The project shared extracts from novels whose protagonists had dementia at reading groups of people with dementia, carers, the general public and student social workers. In this article, we concentrate on reporting the views of participants with most direct lived experience of ageing – people with dementia and carers. We refer to them as ‘readers’ throughout the article.

Readers with dementia spoke about the fictional characters with dementia as if they were old friends. They used self-deprecating humour to draw parallels between themselves and the fictional characters.

The most exciting finding for us was how open and articulate the people with dementia were in describing their internal lives after diagnosis. Readers with dementia spoke about the fictional characters with dementia as if they were old friends. They used self-deprecating humour to draw parallels between themselves and the fictional characters. The title of the paper itself is drawn from a moment in one of our reading group sessions when one reader with dementia, ‘Will’ (a pseudonym), cites Saul Reimer from An Absent Mind who described his Alzheimer’s as more of a case of ‘Sometimer’s Alzheimer’s?’ to which Will responded ‘I love that! That’s definitely me’.

[Carers] were perhaps more sceptical, but still found the stories to be an accurate depiction of living with (and caring for) dementia, at least from their perspective.

It turns out that perspective is everything when it comes to dementia.

We also compare the responses of readers (who are carers) to the same extracts featuring these fictitious characters with dementia. These readers were perhaps more sceptical, but still found the stories to be an accurate depiction of living with (and caring for) dementia, at least from their perspective. It turns out that perspective is everything when it comes to dementia. In our final conclusions we recommend that society and policy-makers should listen more carefully to what people with dementia have to say about their experience of living with dementia. Once you shift your focus from popular disaster metaphors of the disease and start to listen to people who live with dementia, they begin to resemble other disabled people and the case for their rights as individuals becomes clear.

We hope that this article shows how approaches from the humanities can aid gerontologists in their efforts to communicate to society that the complex needs of older people are about more than disease management and control.

Watch this space for future articles arising from our reading group research!

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Book Reviews

“Back to Blackbrick” by Sarah Moore Fitzgerald

Cosmo’s grandad is beginning to exhibit the early signs of Alzheimer’s. A team of social workers appear at the house he shares with his grandparents, hoping to test Grandad Kevin’s memory. If he doesn’t pass this memory test, Grandad will be dispatched to a nursing home. Cosmo is particularly close to his grandparents after his brother’s death and his mother’s subsequent move to Australia, leaves him living in their house. Desperate to help, he follows his grandad’s garbled instructions and uses an ancient key to let himself into Blackbrick Abbey. As soon as he steps through the gates, Cosmo is transported back in time. He meets his grandad as a young boy and gets caught up in a 70-year-old adventure, meeting the people who shaped his grandad’s life. As he plunges deeper and deeper into the strange world of Blackbrick, Cosmo continues to take extensive notes on the past, intending to use these notes to help Grandad Kevin pass his memory test. At the risk of giving away too many spoilers, I’ll leave my synopsis there.

Irish writer Sarah Moore Fitzgerald drew from her own experiences of her father’s dementia when crafting this beautiful snapshot of the relationship between a young man and his beloved grandad. The depiction of dementia is both accurate and shot through with moments of genuine humour and humanity. There are some genuine laugh out loud moments here and also a few scenes which moved me to tears. Grandad Kevin is far from being the stereotype often encountered in dementia narratives. And whilst the magical elements in the book bring a touch of whimsy and other worldliness to the story, at no point does Moore Fitzgerald shy away from confronting the harsher realities of watching a loved one journey with dementia. This, at heart, is a realist novel with a subtle element of the fantastical. 

Back to Blackbrick is full of wonderful, well-crafted and memorable characters and the plot kept me gripped from start to finish. I’d thoroughly recommend it for late primary and early high school readers who enjoy funny, adventure-filled novels. It also offers a great opportunity to introduce themes around dementia and begin important conversations on this subject with younger kids.

Back to Blackbrick was published by Orion Children’s Books in 2013 

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Book Reviews

“Aliceheimer’s; Alzheimer’s Through the Looking Glass” by Dana Walrath

Anthropologist, artist and writer Dana Walrath became a live-in carer for her mother Alice after her Alzheimer’s diagnosis became too much for her to manage alone. Moving her mother from her apartment in New York to the family home in rural Vermont, Walrath used the months they spent together to both record her mother’s dementia journey and forge connections which weren’t previously there. From the start, Walrath is honest about the fact that she is not particularly close to her mother and sees this period of dependency as an opportunity to bond before it is too late. I appreciated the honesty Walrath brought to the stories she tells about her mother and particularly their interactions and conversations. I also loved the humour in this book. It’s quite a gentle, upbeat account of dementia. Alice is placid and compliant throughout her illness. Walrath goes to great pains to show how her mother retained her humanity throughout her journey with dementia. I also really appreciated the way snippets of Alice’s history and the Armenian cultural tradition she belonged to is deftly woven into the narrative.

Aliceheimer’s is an unusual format. Each page contains both a small piece of observational writing and a beautiful artwork which illustrates the sentiment. The art is a mixture of collage and pencil drawing. Each scene depicting Alice is fashioned out of the cut-up pages of a copy of Lewis Carroll’s Alice’s Adventures in Wonderland. Thematically the Carroll text works marvellously as it allows Walrath to explore both the confusing and disorientating elements of her mother’s illness and the fantastical, imaginative scenarios which her dementia frequently pitches her into. I loved the use of collaged texts. It seemed the perfect medium for depicting Alice who, as a lifelong reader, was still enjoying the physical pleasure of holding a book and the comfort of being read to, long after her dementia had significantly impacted her ability to function normally in other areas of her life.

Aliceheimer’s is part of a fascinating series of publications which explore various medical issues through a combination of illustration and writing. The series is called Graphic Medicine and if the other publications are anywhere near as powerful as Aliceheimer’s I’d thoroughly recommend checking them out.

Aliceheimer’s was published by Penn State Press in 2016 

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Book Reviews

Scar Tissue by Michael Ignatieff

First published in the early 90s and concerned with late 80s America, Michael Ignatieff’s novel Scar Tissueexplores the dementia narrative at a point when much less was known about the illness. In fact the narrator, a 45 year old philosophy professor, does not use the term dementia when describing his mother’s condition. Her official prognosis is early onset senility, though the fact that he is able to describe previous generations of close relatives with similar symptoms would suggest some kind of dementia with a degree of genetic heredity. The specific diagnosis and terminology seems less important than the precise and insightful way Ignatieff goes about describing the unbreakable, and at times seemingly unhealthy bond, between a woman living with, then dying of, complications associated with dementia, and her devoted middle-aged son. Ignatieff’s fiction is so well-crafted and believable I continually had to remind myself that I was reading a work of fiction rather than a memoir.

The plot of Scar Tissue is a familiar one. A woman in her sixties begins to forget, then slowly loses her ability to look after herself. After her husband, and primary carer’s, sudden and unexpected death her sons make the difficult decision to sell the family farm and move her into residential care. It’s well-written but somewhat obvious terrain. However, there were two aspects of Scar Tissue which I found incredibly powerful and unique. Firstly, I appreciated reading an honest and powerfully written exploration of the relationship between a son and mother living with dementia. Whilst still living at home, the mother’s physical and emotional care falls almost entirely to the narrator and I found it quite refreshing to hear a man speak honestly and with tremendous kindness of how he bathes, dresses and feeds his mother, all the time ensuring her dignity remains intact.

The second thing which makes Scar Tissue a unique dementia narrative -especially amongst other similar carer-centric narratives- is the way the mother’s illness and eventual deaths completely upends the narrator’s life. Faced with the possibility of losing his connection with his mother he places every other aspect of his life -career, marriage, family- on hold and becomes almost obsessed with visiting her and caring for her. His marriage falls apart. He loses all sense of satisfaction in his job. Eventually his mental health deteriorates to a point where he no longer sees the point in life. It’s not an easy read, but Scar Tissue is one of the few fictional accounts I’ve come across where loss and grief associated with the dementia experience is explored in a really comprehensive way. As such, I found it a bleak but nonetheless important read. 

Scar Tissue was published by Chatto & Windus in 1993 

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Book Reviews

“Erasure” by Percival Everett

I’m just going to begin by laying my cards on the table. Erasure is an absolutely brilliant novel; one of the most interesting books I’ve read this year. It was recommended to me by the novelist Keith Ridgway when I asked for suggestions of novels which explored diversity in dementia narratives. The dementia aspect of the novel is quite slight but still incredibly interesting. It also provides the catalyst for much of the action in the novel. I was particularly drawn to the hybrid form of Erasure. It includes a novel within a novel, a lecture, various fragments and another intriguing plays on linear form. It doesn’t surprise me that this novel won the Hurston/Wright Legacy Award for Fiction in 2002. I’m looking forward to reading more work by Everett now.

The plot of Erasure is an intriguing one. Monk is a black American academic and writer of high brow novels which do nothing commercially. At times he seems to live in the shadow of his grandfather, father and siblings who, on the surface of things, all appear to have been more successful than he is. He also rages against the literary world and its stereotypes of black American culture. He’s particularly frustrated by the popularity of a recent novel which he believes exploits working class black culture, playing to the stereotypes. In rage he writes a short satirical novel in the same vein. He employs a pseudonym and is surprised, then slightly horrified when his ‘piss-take’ novel turns out to be a runaway success, eventually winning the National Book Awards despite his attempts to scupper it in his role as a judge. Morally, Monk wrestles with what he’s done but he also faces a more practical problem. His mother is living with dementia and requires full time residential care. Monk’s high brow books don’t make enough money to support him and his mother’s increasingly complex needs, while the novel he’s so ashamed of can keep them both in relative luxury. Erasure’s a very clever book. It calls into question stereotypes about race, class and the arts world. It’s also very funny in places and incredibly astutely observed.

As a dementia narrative it offers an intriguing picture of an older, black woman, struggling to hold on to her dignity. There’s a really powerful scene in the residential care facility when she no longer recognises her sons and a funny, but also poignant take on night time wandering where the old woman manages to row herself out to the middle of the lake. Erasure also gives a fantastic insight into healthcare provision in the USA. It does not shy away from exploring issues around financial support and class within the context of dementia. Erasure was a refreshing, irreverent and eye-opening look at race and class in modern America. Everett cleverly explores the way dementia intersects with both these issues and many more.

Erasure was published by Faber and Faber Limited in 2003 

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Films

Supernova

Supernova is Harry Macqueen’s second movie. It was both written and directed by Macqueen who spent a substantial amount of time researching dementia and visiting dementia support groups. The film is set against the stunning backdrop of the Lake District and features two very established actors and longterm friends playing lovers coming to terms with a young onset dementia diagnosis. Sam (Colin Firth) is a concert pianist. Tusker (Stanley Tucci) is a writer and his partner of twenty years. Tusker’s beginning to develop the symptoms associated with a rare form of dementia which impacts his spatial awareness and balance as well as memory. I felt more could’ve been made of this fact. At times we see Tusker struggling with balance and fine motor skills but I feel Macqueen could’ve made more of the opportunity to inform his audience that not all dementias are predominantly related to memory loss.

Sam and Tusker have loaded up their camper van and taken off on a road trip across England, revisiting some of their favourite places around the area where Tusker grew up. They also stop to visit Sam’s sister, friends and family in his old home and plan to finish the trip with a piano recital, Sam’s first for a number of years. As the trip progresses it becomes increasingly clear that Tusker’s dementia has progressed to the point where both men must make some big decisions about their future. Tusker has planned to take his own life before the symptoms become too much for him to manage. When Sam discovers this plan, he is utterly devastated and raises some important questions about the nature of care and relationships.

There’s a lot to like here. The scenery is beautiful. The soundtrack is gorgeous. The party scene where Tusker gathers all his friends and family for the final time is a very moving piece of writing. It was fantastic to see a gay relationship explored as a dementia narrative and while I’m still not entirely convinced by the casting of two straight men in these roles, Firth does an admirable job and Tucci is a joy to watch. It was also refreshing to see a slightly more nuanced portrayal of dementia with a nod to symptoms beyond memory loss and linguistic confusion though as I said above, I do think more could have been done with this. 

A few of the scenes were a little cloying. Less said the better about the closing scene where Sam plays his recital while somewhere, off screen, Tusker is supposedly taking his life. The film should have ended before this point. There was no need for an extra layer of schmaltz. I felt the movie rushed the conversation around end of life choices. There was so much more to be said and it seemed quite unbelievable that Sam should change his mind on this massive issue so rapidly. I also really hated the inclusion of a persistent extended metaphor about stars and constellations. It felt clunky and very much like it was trying too hard. And finally, my usual rant. Here we have a successful writer and a successful musician with enough money to make decisions about how they wish to live out the last part of their relationship. There is a notable gap in the world of dementia and film when it comes to exploring the working class experience. I’d like to see some characters who aren’t absolutely loaded for a change.

Saying this, Supernova is a pretty good watch. Catch it while it’s still in the cinema.

Supernova was written and directed by Harry Macqueen and released in the UK in June 2021 

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Book Reviews

“An Unravelling” by Elske Rahill

Irish author, Elske Rahill’s second novel is an epic beast. It follows the lives of four generations of women in a large family, over a particularly turbulent period. Molly is the matriarch of the family. She’s in her eighties and very much focused upon helping her granddaughters, Cara and Freya bring up their young children. Molly is the wealthy widow of a famous Irish artist and as her life draws to a close she looks back on her childhood and early marriage and also becomes increasingly concerned with how she’ll provide for her granddaughters and great grandchildren after her death. Molly has a substantial estate and is closer to the younger generation than her own three daughters. When her health fails and Molly begins to develop dementia, issues concerning the will and financial provision threaten to tear the family apart.

Rahill is a beautiful writer. Her prose is rich and full of poetic imagery. An Unravelling is quite a long, slow read but I appreciated the way it took its time to get underneath the characters’ skin, bringing each of the women to life for the reader. Molly, in particular, is incredibly well-written. This is a character living with dementia who has both a past and a meaningful present. She is an essential part of her granddaughters’ lives, full of warmth and wit and humour. Rahill tracks her unravelling with great care. Molly’s language and meandering reminiscences perfectly convey both the dementia experience and an inherent respect for this dignified and forthright character.

I also appreciated the deep dive Rahill takes into the practicalities of dementia care. This is a novel which very much explores the unpleasant world of finances in regards to healthcare provision and inheritance. It’s something I’ve often heard talked about but rarely see reflected in dementia narratives. Molly’s own mental unravelling mirrors the unravelling of her family as they let issues surrounding finances pull them apart. An Unravelling is a book about women within a family unit; the bonds they form and how these bonds are placed under strain. It’s a wonderful, immersive read and another great addition to the canon of Irish dementia narratives. I would highly recommend.

An Unravelling was published by Head of Zeus in 2019 

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Films

The Father

The Father is playwright, Florian Zeller’s directorial debut. He co-wrote the screenplay with fellow playwright Christopher Hampton based on his own 2012 play, Le Père. I’ve read and written about Le Père on several occasions. It’s an important dementia text in its attempts to allow the audience to see the world through the eyes of someone living with dementia. It is a disorientating, confusing experience but also an incredibly powerful one and none of these sensibilities have been lost in moving the play to the big screen. Though the film still feels reminiscent of a stage play -most of the scenes take place within a handful of rooms- Zeller uses the set to his advantage. The London flat in which the film takes place changes subtly throughout: colour schemes blend, furniture moves and is replaced, and the flat’s layout is almost impossible to comprehend. As in the play, Zeller uses the physical environment of his set to convey a sense of disorientation. It is a very effective technique.

The storyline is a simple one. Anthony, (played impeccably by Anthony Hopkins who received an Oscar for this role), is an older man living with dementia in his daughter’s flat. The daughter, Anne, also beautifully played by Olivia Colman, (honestly this is the cast of dreams), is her father’s sole carer and increasingly distressed by the progress of his illness. Anthony runs through a series of in-house carers. He struggles to get on with anyone. He confuses time. He mistakes Anne’s flat for his own and most worryingly sometimes does not recognise Anne or her husband, (a rather mean, Rufus Sewell). Zeller uses different actors to show the audience what Anthony is seeing when he adamantly insists that this strange woman is not his daughter and this strange man isn’t married to her. The technique is so effective and unsettling that I began to feel as if The Father might be classified as a horror movie. Several of the tropes were present. The domestic familiar made threatening. The oppressive lighting and use of colour. The constant undermining of reality. The set, in particular, reminded me of the house in the Australian horror film The Relic where walls move and doors disappear, mirroring the confusion of a person living with dementia. 

The Father is a difficult watch. It’s beautifully executed and almost perfectly acted by all involved. As an experiment in empathetical viewing it’s really ground-breaking. The viewer is pitched into Anthony’s shoes and spends the following 90 minutes as confused and disorientated as he is. However, there’s little in the way of character development. Aside from a small backstory about his dead daughter we discover very little about Anthony as a man who has lived a long life. For the purpose of the film, he is simply a man with dementia and at times I found this a little reductive though I don’t think Zeller’s intention is to provoke sympathy or even soft empathy for a fully-developed Anthony. He wants the viewer to see the world through the eyes of present day Anthony where dementia has become his dominant narrative. I also appreciated the inclusion of both the examples of elder abuse, (from Anne’s husband), and professional care staff treating Anthony with exemplary kindness and dignity. This is a nuanced portrayal of caring which shows both the worst and best aspects of the care system. One last small point of critique. The characters in The Father are very posh and capable of spending enormous amounts of money on professional care for Anthony. It would be nice to see more examples of working class characters navigating the care system. As frequently noted, there is a distinct lack of diversity when it comes to portraying characters living with dementia. 

The Father was directed by Florian Zeller and released in the UK in June 2021 

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Book Reviews

“The Last Days of Ptolemy Grey” by Walter Mosley

Ptolemy Grey is a true character. He’s ninety-one years old and lives alone in his cluttered apartment in Los Angeles. He’s done an enormous amount of living in his ninety one years. He’s witnessed incredibly violent acts of racism. He’s married twice and lost both his wives though his extended family is so large it’s hard to keep track of who everyone is. He’s accumulated a small fortune in gold coins and cash savings which he keeps hidden in his apartment because Ptolemy Grey does not trust banks. He’s repeatedly threatened by the female drug addict who lives across the parking lot. His grand-nephew Reggie’s just been killed in a drive by shooting. AND he has dementia. There’s so much going in Ptolemy Grey’s life, the dementia is almost an afterthought. Though it’s made his life increasingly difficult. With Reggie dead, he’s not sure who is going to look after him. He can’t remember who to trust. He’s holed up in his tiny apartment where the bathroom no longer works and there’s so much rubbish piled everywhere, he can’t even get to his bed to sleep.

Seventeen year old Robyn meets Ptolemy at Reggie’s funeral. She becomes a kind of surrogate daughter/granddaughter/niece to the old man. She moves into his apartment and very soon has both Ptolemy’s living situation and his life licked into shape. Robyn finds a doctor who’s willing to include Ptolemy in a fictional drug trial. A course of experimental injections takes away his dementia so he’s suddenly able to remember his past and present with vivid clarity. The doctor’s warned him that this recovery is temporary. It will ultimately hasten his death but Ptolemy’s willing to take these odds so he has enough time to settle his affairs and ensure Robyn will be looked after when he dies.

I thoroughly enjoyed The Last Days of Ptolemy Grey. After so many middleclass, white narratives, it was refreshing to read a dementia novel set within a working class, African American community. It offered me a welcome insight into how dementia and ageing is viewed within this community. The extended family is expected to take responsibility for Ptolemy. It’s striking that this is perhaps the first dementia narrative where residential or external care isn’t mentioned at all. The narrative strand involving the complete return of Ptolemy’s memory is completely unbelievable, (I don’t necessarily mean this as a critique). It’s a plot device which Mosley uses in order to allow Ptolemy a chance to bring some level of catharsis to his family and the people he cares about. It works and reads as credible. As do the more realist descriptions of Ptolemy’s life before he encounters the wonder drugs. I was struck by the early descriptions of the squalor and isolation Ptolemy is living in. It resonated with several of my own experiences of older people living alone beyond the point where they’re fit to look after themselves. 

This is both a great read and a captivating portrayal of the dementia experience. I fell in love with the character of Ptolemy Grey. I could easily have read another two hundred pages or more.

The Last Days of Ptolemy Grey was published by Riverhead Books in 2010 

Categories
Book Reviews

“The Visiting Hour” by Frank McGuinness

This brand new play by Frank McGuinness is absolutely bang up to date. Set in a residential care facility during the Covid 19 pandemic it explores the impact of Lockdown upon older people and their loved ones. The Visiting Hour takes place over the single hour in a week when a woman is permitted to visit with her elderly father. Tight restrictions are in place and she is not allowed to enter the building and must communicate with her father whilst perched on a window outside his room. At intervals an announcement reminds her not to outstay her welcome. Only one hour is permitted for each visitor. These restrictions serve to disorientate the father who is in the early stages of dementia and already showing signs of confusion. He isn’t too sure who his daughter is, when or where they are. The Covid restrictions thoroughly baffle him. He can’t understand why his daughter is shouting at him through a window or why she can only stay for an hour. For many people who’ve visited a loved one in a nursing home, hospital, residential care facility or even in isolation at home during the Pandemic these scenes will be painfully familiar. It is heartening to see how writers are already beginning to explore how Lockdown restrictions have impacted the elderly and particularly those living with dementia.

Over the course of the hour the father and daughter banter about events from the past. It is unclear whether these incidents have actually happened or are fabricated anecdotes the father likes to recount. The line between real and unreal is blurred throughout. The two protagonists talk and argue, laugh and even sing together, revealing a profound connection and a degree of fondness. In some ways they seem dependent upon each other. Though the daughter is now looking out for her ageing father’s physical and mental wellbeing, the play reveals how in the past he has cared for her. The Visiting Hour is very much a contemporary play; poignant, recognisable and scarily relevant. In a very gentle, subtle way it asks big questions in regards to how isolation and loneliness, particularly during the Pandemic years, will negatively impact upon our older people. It’s also a beautiful and honest portrait of the relationship between a father and his daughter and how this sort of relationship evolves and changes with time.

The Visiting Hour was published by Faber and Faber in 2021.